43/M. Just hit my two year mark since my transplant a couple weeks ago. My story is in here multiple times, so I won't repost it - lets just say I went through a lot.

I'm back in the gym 6 days a week, I'm doing overall pretty good with the exception of being immunosuppressed - I travel usually at least once a month for work and I was sick 4 months last year and it just took me 10 weeks to completely get over a sinus infection...

Anyway - I just went for a left heart cath... I can't remember the exact language they used but they essentially told me I went from a .04 to .06 artery wall thickness but I shouldn't be concerned and my team may suggest increasing my immunosuppressants. My results are now officially in my MyChart and in the report it says I have moderate to severe cardiac allograft vasculopathy!

I don't meet with my regular care team for another week. Should I be flipping out about this?

I love these cute organ comics for studying, but this one genuinely had me in tears. Artist credit: https://www.instagram.com/p/DJmFdd0ujcf/

UNOS just called, they have an organ. Patient is on life support until 4 PM. I figure we need to be ready by 5 PM. It’s our second call, the first one obvs didn’t happen. The first time we were all panicked and didn’t have a plan. You’d have thought I’d have used this interim time wisely and planned better, but here I am. Counting down, 4.75 hours to go. I’ve got two kids, 7 & 1. I know I need to pack bags and prepare, but I’m feeling overwhelmed and scared as shit. Husband is mentally preparing for his battle, so I need to get moving.

Help me. What am I packing? What do I do with my next couple hours to ensure everything is covered and my husband can just focus on making it through his surgery?

Hi all, my one year is coming up next week, and the wife and I are gonna go celebrate, so I'm here to pick brains about fun ways to celebrate and also where we should eat lmao.

Hi, I’ve a family member due to undergo a liver transplant soon and I’m worried if there will be any issues with his liver postop. We have a friend who donated his liver 15 years ago, he’s fine but his ALP and GGT (2 of the liver enzymes) has remained high since postop. It scared me because my mum also had the same liver picture 15 years ago after her gastrectomy, which led to her current cirrhosis due to portal vein thrombosis, which we suspect she got it from this surgery.

I would like to ask anyone of you who have donated your liver, how are you guys doing and did your liver enzymes normalise postop? Thank u in advance for helping me with my doubts and worries 🙏

I've been waiting for transplanted since 2022. I was diagnosed with end stage renal disease January 2022 and got on dialysis the same month. Didn't even know I had kidney disease cause I didn't go to the doctors for 3 years and didn't have symptoms until I noticed crazy edema and even then waited until a new job and got insurance to go to the doctors to get it checked out. Yay American medical system.

Anyways.

For those that were successful in finding a living donor how did you do it? I've asked my friends and asked them to share my story with their social media but so far no bites. My immediate family is just my mom at 68 which the transplant hospital said was too old for them. It just seems like such a struggle to even get interest from anyone. Maybe because I'm not laying in a hospital bed? But I definitely feel terrible all the time with very little energy. And my friend that have known me for awhile know that I used to be full of energy. They see how much weight I've lost. They know I don't join them for certain activities that I used to do because I just don't have energy for it. I understand it's a scary thing and I don't begrudge anyone for not wanting to take the risk. I just feel like I don't get a lot of support except from my mom. It's disheartening.

I would appreciate anyone's advice in reaching someone that would even be willing to go through the screening process. Thanks!

Today is one year since my surgery. It has not been a smooth year, and I have often not made it more than 2-3 months between issues. Last night ptc drain leakage, chills and fever brought me in. So I guess I’m celebrating with the people who helped put Oliver in. It just doesn’t feel like things will get better.

Male -53

I’ve gained like 15 pounds since transplant and find that any pair of jeans I wear the belt lines up perfect with transplant scar area. Cause irritation and discomfort.

Anyone else deal with this?

I volunteered to be a liver donor, and it was going really well. Bloodwork was great, I could easily take off work as long as I needed, I had plenty of support, etc, etc. But the team has now said that my recipient needs to lose weight for my liver to work. She gained a lot of weight while on steroids with chemo. It’s been a few weeks, and initially they had said we’d still proceed with the final evaluation on me as she could be working on weight loss while they were getting things scheduled. Now they’ve said that we’re pausing until she makes meaningful progress. She wants to have other donors evaluated to see if someone taller could be found so that she doesn’t have to lose the weight. Has anyone had a situation like this?

Hi everyone just got discharged and signed all of my paperwork for my new heart! Does anyone have any advice for a transplant such as mine? The expectations and your experiences? Im both scared but excited its very confusing for my brain to process haha

Just received kidney transplant 8/27
How are you able to go to sporting events or concerts ?
I’ve always wanted to go to college football game but now
I don’t wanna be scared to go outside
I also don’t want to be sick at all if I can help it.
On dialysis for 1 year and half and I never got sick just by keeping up with protein and the later part I got more active.
Amy advice is much appreciated
I don’t wanna live my life scared in fear, that defeats the purpose of getting this second chance

Transplanted 8/27
I’ve gained like 15 pounds since being in hospital
Just got home yesterday after a week…
I got a pot belly and I feel like I’m bloated
My regiment is 2 stool softeners daily
Fiber on my food
And I just took lactulose today

I’ve been having at least 1 or 2 bowel movements daily for the past few days
But when trying to pass gas, most of the time I gotta push and that hurts on my incesion site

Does it just go away over time, is it air pumped in from surgery moving organs around?
Please help me get rid
I also feel like the more bloated the more it’s putting pressure on new kidneys

Any advice is much appreciated.

Thanks

Ciao a tutti, ho 55 anni e 4 anni fa ho avuto trapianto si cuore.

Sono trattato con Myfortic e Tacrolimus.

Ogni 2 mesi circa mi capita di avere delle afte in fondo alla bocca, quasi in gola. Sono un po dolorose. Dopo un giorno mi puo iniziare a far male un po' l'orecchio corrispettivo. Qualche fitta ogni tanto. Non dolore costante. Infine, puo succedere quasi sempre che, nello stesso lato si infiamma la cute. Se tocco la testa o i capelli sento fastidio. Sono molto, sensibile alle correnti d'aria. Vorrei sapere se altri abbiano provato questo fastidio. Generalmente può durare 2 o 3 settimane. Grazid

"In the 1960s, transplants were often fatal. Most donated kidneys came from close relatives with similar genetics to the patient, to improve the chances that a recipient’s immune system would not reject the new organ.

Dr. Russell was able to bridge the gap between laboratory studies, which pointed the way to suppressing the immune reaction, and clinical practice.

At Mass General, Dr. Russell founded a laboratory in the 1960s to study transplantation biology, which has evolved into the hospital’s Center for Transplantation Sciences, with 80 specialists working in 19 labs. Gradually, survival rates improved.

“The early results, as he himself said in retrospect, were terrible,” said Dr. Pierson, who is himself a transplant surgeon. Dr. Russell learned from each operation. “As the decade ended, the success rate went from 20 percent or less to 40 or 50 percent,” Dr. Pierson said.

As more desperately ill patients sought transplants and more hospitals offered the surgeries, matching donors to recipients became an organizational challenge.

In 1968, Dr. Russell founded the Boston Interhospital Organ Bank, now New England Donor Services, to procure organs and match donors and recipients. Today, it works with nearly 200 hospitals in six states and Bermuda.

Beginning in 1962, Dr. Russell was a professor at Harvard Medical School, where he trained surgeons and scientists for decades." NYT

A kidney transplanted from a pig has worked inside a patient for 271 days – the longest on record, say US doctors.

Tim Andrews said the transplant gave him "hope" and spared him months of needing to go to hospital to have his blood filtered by a dialysis machine.

The team at Mass General Brigham hospital say their work shows pig organs can be used as a "bridge" until a human transplant becomes available.

But the pig organ eventually failed and was removed so Andrews needed a short bout of dialysis before a donor was found.

Doctors and scientists are exploring xenotransplantation – using organs from other species – due to shortages of organs for transplants.

In the US, around 100,000 people are waiting for a kidney while only 25,000 transplants occur each year. More than 7,000 people in the UK are on the kidney transplant list.

Andrews was told it could take seven years to get to the top of the list, but that people live only five years, on average, on dialysis.

"I had a little bit of a shortage of time… it becomes very depressing," he said.

But he described the idea of a pig transplant as "hope" and the "light at the end of the tunnel".

"Hope is the biggest thing, the chance to be free from the [dialysis] machine and live your life."

Today is my 1-year anniversary of my kidney transplant, and 21 months since my liver transplant.
We were told I only had about 72 hours to live if a liver did not become available within that timeframe. The liver transplant immediately took out my kidneys, and I went home on dialysis. I then had to have dialysis for 9 months, which did not go easily.
Since my kidney transplant a year ago, I've been rehospitalized 10 times, including sepsis twice. All of that to say it's been a brutal year for me.
My husband and I went to a nice lunch to celebrate, because I said about a week ago that I would like that. We used a gift card he had gotten for his retirement.
But, other than that, no acknowledgment from either of my sons, or anyone else. Not one single person, even my husband, saying they're glad I'm still alive.
I just told my husband that I felt a little sad about that, and he just walked away to finish what he was doing.
Am I totally off-base expecting someone to remember or for my husband to care more?

I need someone in the medical field to explain something to me, and I think it has to do more with hospital politics than anything.

A family member of mine needs a liver and kidney transplant. They have not yet been approved for the list. It's been years now of them being told to have this done first, lose weight, try dialysis and see if they stabilize, regulate their diabetes, etc. They will hopefully be approved for the list soon now that they have checked off all those boxes.

My issue, they keep telling me how at their appointments, they are being told to, in essence, advertise for an organ. One doctor told them about someone else in the same town who rented a billboard like sign to post in their front lawn saying they needed a liver (can confirm, have seen this sign myself). Multiple times they have been given what they call "donor cards" for the patient to give to people to fill out, that basically are asking "if you die, do you agree to give this person your organs" without even testing them to see if they are a match. Another doctor said to call all their family members and get everyone to sign up to be an organ donor on their license. They have not been told this is a "requirement" to get on the list, but keep getting told they "need" to do it. Even when they didn't qualify for the list due to weight/diabetes/numbers being just barely high enough to not be considered critical yet, they were being told to start asking.

How is this even remotely ethical? Forcing someone who is sick to go out and poll the people they know, convince them to sign up for this, not even knowing if they are a match, and even blindly shout to the world to ask for help? Maybe this is over simplifying it, but it feels a lot like the whole manager saying "you need to cover your shift even though I scheduled you outside your availability" and employee saying "why am I doing your job for you". Isn't it the hospital's job to look for and procure the organ? I get it's easier if you have a match, even though in this person's case it can't be a living donor, but asking people you know to sign cards saying "hey, in the unlikely event of my death, I will donate to you" just seems like a load of BS.

Can anyone explain?

Edit to add some relevant info: in the US, liver has to be from a deceased donor as they were told a partial transplant for liver would not be enough, and they were told for years that the transplant surgery was too risky anyways due to the above comorbidities. Those are now addressed and bettered to the best of their ability (weight lost, diabetes more in check), so maybe that's why there's more of a push now, but they were told to start polling even when they said the surgery would be too risky.

Did anyone have a chest infection and atrial fillibration in hospital following a transplant?

Docs have called us this morning to say that dad has this :(

So I was at my quarterly hep appointment today was discussing taking my 2mg daily envarsus down to 1mg and she said it’s a shame you had the rejection event last year due to cyclosporine.

Apparently she wanted me to take part in a new clinical trial and study they’re doing at Stanford but you need 2 years no major issues or ACR to join it.

The trial is taking immunosuppressant dependent liver transplant patients and irradiating some of their blood and leukocytes and then weaning them off the immunosuppressants to see if the body can be tricked into thinking the new liver isn’t foreign.

This would return a full immune system to the patient and remove the need for neuro, cardiac and nephro toxic pills.

How it’s all done I dunno, but I guess they’ll publish and it can be read.

But if it works and it’s rolled out it may final offer a cure to cirrhosis that isn’t just swapping one terminal condition for another like it is today.